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Advice for loved ones of OHS Patient

  • 1.  Advice for loved ones of OHS Patient

    Posted 08-18-2021 12:50
    Hi all,

    My name is Sarah. I just joined this community and this is my first post! My boyfriend was diagnosed with a congenital heart abnormality this summer and will have open heart surgery soon. He is in his mid 20s (as am I) and we are both pretty terrified. We have had some time to process the diagnosis, but some days I still find it so hard to believe this is really happening... you know?

    If you or a loved one have had OHS, can you give any advice/reassurance for the surgery/recovery process? Anything that would help me support him? Perhaps an idea of things you were able to do within weeks, months, years after the surgery?

    Thank you and God Bless,

    Sarah

    ------------------------------
    Sarah Tay
    ------------------------------


  • 2.  RE: Advice for loved ones of OHS Patient

    Posted 08-18-2021 18:19
    Sarah,

    I am 56 and had OHS this past March; I had a single CABG following a Widowmaker 99% blockage heart attack the previous summer.

    I was terrified too -- just the thought of open heart surgery! Holy Hannah! But in all honesty it was not nearly as bad as I expected. Here is my advice:
    1. Stay positive and do what he can to be calm before the surgery. Deep breaths, meditation, whatever it takes.
    2. If he is a praying individual, I recommend that he take them up on the Chaplain visit before surgery - and after if they offer it. It really helped calm my nerves.
    3. Do everything they ask of you after surgery. Walk the halls, use your heart pillow all the time! Drink lots of water. Ask for protein shakes - the extra protein helps you heal. He should do the Incentive Spirometer as much as he can.
    4. Sleep when you are tired, sit up in a chair when you're not. Listen to your body.
    5. Don't be shy about calling in the nurse if anything seems odd or you need anything. That is what they are for. Ask your nurses lots of questions! 
    6. Listen to music, meditate if that is your thing, watch YouTube or shows that you enjoy.
    7. Stay on top of your pain. Don't let it get away from you. Ask for pain medicine early and often. For me the pain really wasn't horrible. I expected much worse.
    8. You will probably have chest tubes to drain the blood. It's weird, but not painful. When they remove them, they will walk you through the process. If they don't, ask them to! We actually ran through the process a couple of time just so I would be familiar with it and not so creeped out. It wasn't bad. Just weird.
    9. You will probably also have a catheter -- follow the same advice as #8.
    10. Don't be too horrified about pooping on a commode in front of people. It is what it is and it is way better than not pooping! There is nothing they haven't seen before.
    Once at home:
    1. Continue to use your heart pillow all the time
    2. Try to get up and walk around the house once an hour. It is easy to fall in the trap of watching Netflix all day.
    3. If you can, order some wedges for the bed. You have to sleep on your back which I don't normally do. They helped.
    4. You may also want a bench for showering. I found showering and getting dressed to be exhausting! Take breaks.
    5. Be prepared to wear super comfy clothes for awhile. You may need help getting your shirt on since they probably won't want you raising your arms above your head.
    6. Keep doing the Incentive Sprirometer.
    7. Keep your hear pillow near you for sudden sneezes or coughs.
    8. Drink protein shakes at home too.
    9. If it is nice out where you are, try to sit in the sunshine once in awhile. Good for healing and your soul. Keep your incision out of the sun though!
    You have your young age on your side. Your recovery and healing will be probably quicker than the rest of us oldies. :)

    I am 4 months since surgery and I have never felt better. I am doing everything I was able to do before, and then some. I ride my Peloton hard 5-6 times a week and feel great doing it.

    He is very blessed to have you as his support person; you got this girl! I am glad you reached out and I hope this helps somewhat.

    God's blessings for both of you,
    Evelyn




      ------------------------------
      Evelyn Quast
      Maple Grove MN
      ------------------------------



    1. 3.  RE: Advice for loved ones of OHS Patient

      Posted 08-19-2021 10:18
      The advice you received from Evelyn -- is that right? -- was wonderful. (It should  be printed up and distributed to all patients pre-surgery.) My OHS was nearly 10 years ago, when I was 69, and these have been the best 10 years of my life. (It helps that I was already retired when I had the operation.) I am (nearly) fully active: no running; limit my lifting; no contact sports (smile). Each day is fresh and meaningful. I tell people, "I don't recommend it, but you can get a lot out of it." I'll repeat: Stay Positive.

      Here's a tip, discovered by my wife. When your boyfriend is in the shower, put his towel in the dryer, so when he steps out, he'll have a nice warm one to wrap himself in.



      ------------------------------
      Bob] Levin
      Berkeley CA
      adelbob@comcast.netRobertRobert
      ------------------------------



    2. 4.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 12:12
      Bob,

      Thank you for replying! Hearing you say these have been the best 10 years of your life brought a smile to my face. I hope you continue to enjoy your retirement.

      Best regards,

      Sarah

      ------------------------------
      Sarah Tay
      ------------------------------



    3. 5.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 12:10
      Evelyn,

      Thank you so much for your thoughtful response! I agree with Bob (below) that your list should be printed and given to every patient! I will refer back to this list often while we prepare for this. I'm so glad to hear you are riding your Peloton regularly, that's awesome!

      How was it going through this process during COVID? That's another thing that's made this a bit challenging as I'm sure you know. Not sure how the visitation and all of that will work.

      Thanks again :)

      Sarah

      ------------------------------
      Sarah Tay
      ------------------------------



    4. 6.  RE: Advice for loved ones of OHS Patient

      Posted 08-19-2021 09:45
      Sarah,

      I had 5 way bypass surgery at age 61 in Jan 2007. I agree with everything Evelyn said. His age is in his favor and he should do well and have a good recovery. One thing she did not mention is Cardiac Rehab. He should be offered this program and it will help tremendously in his recovery. He will be sore and uncomfortable for awhile but he should be fine. I would think he will be able to do most anything he wants to in life.

      I will tell you a few things I have done since my surgery and please don’t think I’m bragging but just showing what is possible. I have always be an avid motorcycle rider and 5 months after my surgery my wife and I rode across country from Virginia on the motorcycle. At age 78 I still ride most every week year round. I have participated in 5K and 10K events. I’m not a runner but I can walk at a good pace and throw in a little jogging and do OK. I have also been sky diving 3 times since age 70.

      In closing, just stand by him and offer support and encouragement. I wish you both the very best in life.

      Tommy Broughton
      Mended Hearts Chapter 28
      Richmond, Va.

      Sent from my iPad




    5. 7.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 00:56
      Hey Sarah,
      To prepare I watch videos of people coming out of surgery and their stay in the hospital. That was a good mental tool for me. I also tried to not make the fact that I was having “OHS” so big. These type of surgeries are done so often now it’s like any other surgery. The recovery is going to be a little longer, but try not to make this so big. The more prepared you can be at home the better. Things move fast in the hospital. Making home comfortable is key to good recovery ❤️‍🩹
      Carrie

      Sent from my iPhone




    6. 8.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 12:21
      Hi Carrie,

      I saw a video on YouTube about a young guy named Wyatt who had open heart surgery last year - his dad recorded the whole process. They recently posted a one year post-surgery update, and I was so happy to see that he was able to go to an amusement park and ride roller coasters! You're right, these surgeries are fairly common these days. Thank you for the advice :)

      Thanks again,

      Sarah

      ------------------------------
      Sarah Tay
      ------------------------------



    7. 9.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 05:57
      Hi Sarah,

      You just received some great advice from my friends.  I'll add a little more without repeating what they said.  I've been a gym rat, athlete, distance runner my whole life but, at age 67, I had a heart attack and emergency quintuple coronary artery bypass OHS.  The good thing about emergency surgery is that you don't have any time to think about it, so I was lucky that way.

      After the surgery, I guess I was lucky as well, in a way.  I contracted pneumonia from the ventilator and they kept me in a medically induced coma for two weeks while they fed me antibiotics to knock out the pneumonia. During those two weeks, I was having vivid, lifelike dreams/hallucinations that I was recovering poolside in a hospital in the Bahamas and helping the administration with some legal problems (I'm a lawyer).

       When I finally woke up, most of the tubes had already been removed and I had no pain whatsoever.  Instead, was pissing off the nurses by threatening to do pullups from the arm of some medical device over my bed, asking for a cocktail in response to inquiries about what I wanted, quoting movie lines and generally just being my usual wiseass self.  My wife was explaining to the staff that I must be feeling fine because they were now experiencing whatever she normally has to suffer through.

      There was just one problem.  After two weeks in a medically induced coma, you basically lose all your muscle tone.  I couldn't even get a forkful of food into my mouth, let alone walk.  So, after another week recovering in the hospital and driving the nurses crazy, they boxed me up and shipped me out for a three week stint at a rehab hospital, where I quickly ( and I do mean quickly) started eating, walking, cycling again.  I remained a wiseass, this time with the physical therapists.

      Three weeks later, I was home, kissed my front door, hugged my faithful old dog, I started walking again in earnest and, one week out of the hospial, I was up to a mile a day, plus going three days a week to outpatient rehab.  To make a long story shorter, six weeks later, I had graduated from rehab, was back at my own gym beginning to lift weights again and back to work.  Three months later, I was running, rapidly regaining weightlifting strength and muscle, and doing wall assisted handstand pushups.  And it kept getting better.

      I'm now 71, semi-retired, still enjoying all my old physical activities (except running, due to unrelated back problems that somehow don't interfere with my lifting weights) and pissing off my wife, who was and is still a saint for all the ways she has helped me notwithstanding all of her travails in watching what I went through.  She truly suffered far mote than me, and I am eternally grateful for her love and support, and the love and support of my daughter.  In fact, to echo Bob Levin, the last 3 1/2 years of my life have been the best 3 1/2 years of my life.  I'm still a wiseass, but I'm also filled with gratitude every single day for just being alive and experiencing this wonderful universe and all the wonderful people, animals and trees, the river, sun, rain, clouds and wind with which I know that I'm connected in being.

      You and your boyfriend will be fine.  You will survive this and grow, physically, emotionally and spiritually, as I have, as all of us have.

      Best of luck and please stay in touch with us.  The people on this website are amazing, wise and loving human beings.

      Ira

      ------------------------------
      Ira Reid
      Hoboken NJ
      ------------------------------



    8. 10.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 12:28
      Hi Ira,

      Wow I'm sorry to hear you had complications after the surgery, but you made me chuckle describing your Bahamas hallucinations. I'm sure your family was worried sick, but at least you were enjoying yourself! Lol.

      It's awesome that you're still physically active, too. And that you were able to get our of Rehab quickly. My grandmother has had about 7 stays in Rehab centers after various surgeries/injuries, and I know those places can be really difficult.

      I also appreciate what you said about the gratitude you have for the world around you. Sometimes it takes a crazy life event to put things into better perspective.

      Thank you so much for your thoughtful reply.

      - Sarah


      ------------------------------
      Sarah Tay
      ------------------------------



    9. 11.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 10:17
      such great advice everyone has given you.
      September 18 will be my 9 year “heartaversary”. All those tips especially Cardio rehab are beneficial for your boyfriend l. Removing rugs in ath rooms etc reduces fall risks.
      We are here to help you, the caregiver, also. It is very worrisome when your man comes home from the hospital; there everything was gone for him: now you are the chief nurse .
      Please let friends and family help you!! with meals, laundry, errands, staying with him so you can go out ( beauty shop etc). it is a gift you give them: letting them help.
      Please be sure to get your own sleep and eat healthy




    10. 12.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 12:31
      Hi Marilyn,

      Thank you for reaching out and for the great advice. I really appreciate what you said  - "it is a gift you give: letting them help". I think it is easy to forget that people really do want to help. That was an important reminder :)

      Best regards,

      Sarah

      ------------------------------
      Sarah Tay
      ------------------------------



    11. 13.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 12:15
      Hi Tommy,

      Yes they have mentioned cardiac rehab and I believe he is planning to do it. And no I don't think you are bragging! That is an awesome list of accomplishments! I showed my BF what you said, and he loves that you've gone skydiving! He says he wants to do that some day (I'm not so sure how I feel about that....) and hearing that you've done it 3x is awesome. Thank you for your thoughtful response.

      Best regards,

      Sarah

      ------------------------------
      Sarah Tay
      ------------------------------



    12. 14.  RE: Advice for loved ones of OHS Patient

      Posted 08-20-2021 17:26
      Sarah, you are in the right place.  I and my family have been where you are except I was much older at the time.  I WAS 58 HAD A 4 way OHS
      == I"LL BE 83 IN DECEMBER .  I golf, play Pickle ball. Yes still dance--Drink some good stuff---- No smoking- You both have a long road to enjoy  life.
      Just keep a smile on your face and in your voice and the worry in the trunk of your car not to be heard from until next year.
      .
       The one thing that helped me greatly as well as many other people that I visit with at our local hospital.       MUSIC !!!!
      MUSC along the pre and post surgery road  a great  destress and anxiety reducer.. Plug in his phone or I-Pad, put on his head phones and
      tune out the world ( YOU TOO). At night when its quiet you think alot-the music puts him in a different place. Pre-surgery, In recovery in the ICU at home.

      Up beat anything he likes. Some may like soft quiet strings.  15 minutes or an hour. There is no right or wrong. If it lifts him up and puts a smile on his face ----
      that's the right music. YOU Tube--endless selections    i-Tunes---spotify- at your age no need to advise where to find music.

      Follow the doctors . Don't dig too much on the internet.
      I hope I helped put some water on your fire.  All the other advisers  are right on. Evelyn should  have it bound with a nice cover for the book shelf.
      You both in your mid 20s have a great advantage over us old experienced OH patients. your stronger inspirit and body.

      Recovery will take time so go with the flow and be thankful that the problem was found and that you have the time to fix it. Not everyone gets that chance.
      Best regards,
      David Rosen---Chapter 206 Palm Beach Co. Fla.


      ------------------------------
      David Rosen
      Lake Worth FL
      (561) 969-7010
      DavidRosenLake WorthFL
      ------------------------------



    13. 15.  RE: Advice for loved ones of OHS Patient

      Posted 10-25-2021 12:30
      Hi all!

      I wanted to come back and give a post-surgery update on my BF. He spent a total of 4 days in the hospital, and is now about 6 weeks post-op. He just started cardiac rehab last week. He and I are back to going on walks (up to 45 minutes!) and other things like grocery shopping, seeing a few friends, etc.

      Because his surgery was to treat a birth defect, he has to undergo some more testing in the next few months to make sure the surgery actually solved the issue he was having. So fingers crossed on that!

      Thank you all again for the advice and kind words. Going through crazy medical things can be really isolating, and hearing your stories helped ease our worries and feel less alone.

      Kind regards,

      Sarah

      ------------------------------
      Sarah Tay
      ------------------------------



    14. 16.  RE: Advice for loved ones of OHS Patient

      Posted 10-26-2021 06:45
      This is great news, Sarah!  It sounds like your boyfriend is right on schedule with his recovery.  The fact that he's so young compared to most of us will make his healing process so much faster than ours was, and I had no complaints about the speed of mine at 67.

      Please keep us posted.

      Ira

      ------------------------------
      Ira Reid
      Hoboken NJ
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    15. 17.  RE: Advice for loved ones of OHS Patient

      Posted 10-27-2021 22:37
      I had a birth defect repair too. I'm so happy it was discovered at such a young age. We are blessed to not have experienced what so many of the members have, a heart attack. Enjoy the time you have together. Don't sweat the little stuff. Have fun and go on adventures!

      ------------------------------
      [Carrie] [Kashani]
      Parapro
      ISD
      [White Bear Lake [MN]
      Carrie
      ------------------------------



    16. 18.  RE: Advice for loved ones of OHS Patient

      Posted 10-26-2021 08:59
      Thank you for sharing and wishing the best coming to you and your family. ❤️

      ------------------------------
      Long Tran
      Omaha
      ------------------------------



    17. 19.  RE: Advice for loved ones of OHS Patient

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      carlo pinini
      Engineer
      TDLS
      Miami FL
      ------------------------------



    18. 20.  RE: Advice for loved ones of OHS Patient

      Posted 10-30-2021 07:06
      Oh I am so glad, Sarah!! Thank you so much for keeping us posted.  Best to both of you.  You are a wonderful girlfriend! :)
      LL

      ------------------------------
      Liza Levine
      New York NY
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    19. 21.  RE: Advice for loved ones of OHS Patient

      Posted 11-02-2021 22:07
      Dear Sara
      Is there a Mended Hearts chapter near you?
      I think that would be helpful to meet others in similar situations and to share your stoty!

      Marilyn B. Rosenhouse
      Mobile: (214)850-0655